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Our Mission is Personal with Sarah Glass
Manage episode 402128948 series 3349924
Innehåll tillhandahållet av n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen), N-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen). Allt poddinnehåll inklusive avsnitt, grafik och podcastbeskrivningar laddas upp och tillhandahålls direkt av n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen), N-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen) eller deras podcastplattformspartner. Om du tror att någon använder ditt upphovsrättsskyddade verk utan din tillåtelse kan du följa processen som beskrivs här https://sv.player.fm/legal.
For n-Lorem’s Chief Operating Officer, Sarah Glass, the mission of n-Lorem is personal. Her son Ethan was diagnosed with a nano-rare mutation. A geneticist by training, she joined n-Lorem to oversee and direct the organization’s efforts to provide hope and potential help to those who need it most. It's more than just a job for her; she's powered by her son and the entire nano-rare community.
1:20 Sarah’s background, early life, and scientific interests
7:20 Thinking about the patient experience while at a Contract Research Organization
8:43 Rare disease trails are relatively new
10:54 Sarah’s son, Ethan, is a nano-rare patient
16:15 How long it took for Ethan to receive a diagnosis
21:35 Ethan's diagnosis and symptoms
25:55 How Sarah heard about n-Lorem
29:30 How does one come to terms with caring for a nano-rare child; How do parents continue looking for opportunities of hope when they may feel hopeless
32:58 What Sarah has learned while at n-Lorem
36:48 The biggest surprises Sarah has encountered during her journey at n-Lorem
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